I am a person with myalgic encephalomyelitis (chronic fatigue syndrome, or ME/CFS) and for the last six months or so I have been stuck in the severely ill category. What this category means is that I am confined to my bed the majority of the time, unable to care for myself or function normally due to the severity and complexity of my symptoms. On the average day, I cannot cook, clean, bathe myself, or even stand long enough to make a sandwich or brush my teeth. If I’m lucky, I can make it to the bathroom on my own, on time. I cannot drive to the store or pick up my own prescriptions or even make my own doctors appointments. Most days I cannot even look at a computer screen for longer than 10 minutes and never without the brightness turned all the way down or watch television for longer than an hour or two with the television set just right and my sunglasses on and most of the time I pay for even this short period of entertainment and escape. I cannot go out into the sunshine or even open the curtains on an overcast day. I cannot read, write, draw or paint. I cannot bear the sound of music or even my husband’s own voice or the squeaking of the floorboards over my head. Every sound, every light, every movement turns the aching pain in my head to the level of excruciating, from a heavy thudding to a searing fire or undulating waves of agony that may or may not retreat once I’ve quit the activity.
I have nothing but time and the ability to do nothing with it. I am trapped in a body that will tolerate nothing but momentary glimpses of a cell phone no one calls or texts that is almost too dark to see. The highlights of my day include snipets of audiobooks that whisper through headphones, 5 minute samples of magazines I’ve read a million times, a few minutes of adult coloring books, some quiet conversation with my husband (the only human being I see for weeks at a time) and my precious hours of television, though I pay for them dearly.
A bath takes days to recuperate from, a doctor’s visit weeks and never a day goes by that I am free from head pain and auras, muscle and joint pain, yips, paroxysms and spasms. I have either constipation or diarrhea with nothing in between, constant nausea, chest pains, tachycardia and arrhythmia, and non-epileptic seizures that occur anywhere from several times a day to a few times a month. My cognitive dysfunction has gotten to the point that I sometimes forget how to spell common words, perform simple mathematical equations and ask my husband the same question 3 times in as many minutes. I am 44 years old.
I’m sure you’re asking yourself by this point, “if this woman is so sick, then how is she writing this?” The answer is surprisingly simple: Curcumin; a derivative of the spice Turmeric. On May 21, I spent some of my precious cell phone time watching a presentation Dr. Jarred Younger gave for the Solve ME/CFS Initiative on his current research projects at UAB. I raved about it then (he’s so brilliant, you really must watch it, here), in part because he reminded me of Curcumin, a supplement I took for a while, but was forced to quit when my husband lost his job. Unfortunately, it didn’t really occur to me that it was shortly thereafter that I landed myself back in the severe category and have been doing nothing but bailing water ever since. Here’s a clip of him speaking just about way to regulate microglia (aka bring down inflammation in the brain):
I always knew Curcumin was a really awesome antioxidant with anti-inflammatory properties, that it gave me more energy, better clarity of mind and a whole lot less pain in both my muscles and my joints. What I didn’t know until Jarred Younger explained it is that it’s one of the few natural anti-inflammatory compounds that can actually breach the blood/brain barrier, thereby alleviating the brain inflammation that likely drives a whole heck of a lot of the symptoms we ME/CFS sufferers see. It also does a whole lot of other cool stuff. Take a look.
OK, I feel like I have to say likely, because absolutes are dangerous with a disease like ME/CFS and all of its types, but I feel like brain inflammation is (or will be proven to be) a universal trait of ME/CFS and the first stop needs to be ELIMINATING that inflammation. To me, if that can be done in a safe, natural way, so much the better.
This is my second time trying Curcumin, but probably the most impressive, given the depths from which I must climb to recover. I don’t see myself going off of it ever again, even if it means not eating the amount of food it costs me to purchase it in exchange. It’s that vital to my health, I see that now. To help you see it too, let me tell you about the changes I’ve seen from when I started taking it on May 27 to today, June 6.
By May 29, my non-epileptic seizures had ceased and my yips and shaking had calmed. There was a decrease in my head pain. I was able to increase my TV time and sit up slightly longer in my recliner. On Monday, May 30, my joint and general muscle pain were nowhere to be found and my muscle spasms were down to a few uncomfortable twinges; a far cry from spasms that were overtaking my diaphragm and causing me to nearly fold in half in jerking motions.
June 1 began with a doctor’s appointment that I completed in my wheelchair, however I managed to stay in the car long enough for my husband to collect my prescriptions and went to the hospital to have my blood drawn all in the same trip. This would have been impossible a week earlier. I was completely absent spasms, yips, tremors, and muscle or joint pain of any kind.
June 2, I anticipated a wave of post-exertional malaise for all the activity the day before, but I felt better instead of worse. I took a bath with minimal assistance, stocked my pill organizers for the week and enjoyed some more television with only the lightest of headaches. I still spent a lot of time in bed, but was able to spend several hours in the evening up watching television in my recliner without a migraine as a consequence.
On June 3 I was finally able to spend some significant time out of bed, laying down only in the afternoon and remaining in my recliner the rest of the time. I even managed to do a bit of light pick up around the house and spend some time standing in one spot, walking, and sitting upright.
My mental acuity really began to hit strides on June 4 and when I found myself inspired to write a blog post in response to an academic piece on antipsychotic use in fibromyalgia, I found I was finally able to express myself cogently and the act didn’t make me feel like I was going to throw up and pass out simultaneously anymore. What a blessing to be able to express myself once again!
Yesterday, I spent a lovely pain-free day despite having woken at an ungodly hour. I cooked. I cleaned. I worked on my computer for several hours and watched TV at the same time and never once had a single headache, or migraine. My vision was a tiny bit spotty, but though I’m not sure if where it’s at now are considered auras or not as they don’t ever seem to go away no matter how good things seem to get. My memory seems to continue to improve and I am hopefully I will slowly and *very carefully* be able to begin building up a tiny bit of stamina again.
And here I am again, feeling great and doing what I love; writing. Having taken Curcumin before, I know it’s not the total solution. There are a couple of other things I want to try adding and a few other things I already take. There are also some more tests I need to undergo to explore why I’m still sleeping so terribly (if they yield any answers at all),and I want more answers like we all do, but whatever the case, I’m incredibly grateful to Jarred Younger for his thoroughness in listing off the substances that will affect microglia, for reminding me of the wonders of Curcumin and for giving me a bit of a tug and saving me from some of the muck and mire that is ME/CFS. If I can do that for just one other person, it makes sharing all these terribly private, embarrassing things worth it. And now maybe I can take care of myself, some of my household, and spend a little time at the pool getting a little muscle back, too.